Thursday - December 10, 2009
The First Stitch - November 2009
As the month of November comes to a close, a group of women from church gather for a night of discussion and mending. Some of us bring along needles and thread and hole-in-the-knee clothing to patch, or hems to take up, and some of us come with heart-full sorts of mending, too: spiritual and soul-full concerns that could use time and attention.
At the gathering, a few people stitch. Some use safety pins. Others use tape to repair projects they brought along.
We read aloud, and each woman shares wishes for things that need to be healed in her life. Most everyone agrees that relationships are in need of tending. Sometimes bad habits need some attention, too. Oh, and the usual lists...the worries that crowd close during the holidays: health, homes, incomes, safety, and so many other issues.
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As the month of November comes to a close, a group of women from church gather for a night of discussion and mending. Some of us bring along needles and thread and hole-in-the-knee clothing to patch, or hems to take up, and some of us come with heart-full sorts of mending, too: spiritual and soul-full concerns that could use time and attention.
At the gathering, a few people stitch. Some use safety pins. Others use tape to repair projects they brought along.
We read aloud, and each woman shares wishes for things that need to be healed in her life. Most everyone agrees that relationships are in need of tending. Sometimes bad habits need some attention, too. Oh, and the usual lists...the worries that crowd close during the holidays: health, homes, incomes, safety, and so many other issues.
It's a reminder that holidays aren't always a time of celebration. Some lives are broken or bare. People are struggling with poverty, addiction, relationships, housing, jobs, illnesses and other crises. Certainly our own family knows the truth of struggling for reasons to be glad or grateful...
Homeless shelters fill up in the winter, under strains of seasonal expense, escalating domestic tensions, and due to many other losses. Food pantries give out whatever groceries and necessities come in, so families may eat. Caregivers pay extra attention to families and seniors at risk. Toy drives remind us that sometimes people cannot even fill a child's magical wishes, though they would like to be able to do so. Twelve-step meetings are jammed with people trying to stay sober and safe. Emergency rooms are the last....or perhaps the first...refuge of desperate folks who need something...hope, help, health or maybe a little heat on a cold night. Blood banks run low on blood and platelets, and seek additional pints from willing donors.
Those who can help, do so. Shelves are stocked. Gifts are wrapped and made available. Shelters find space. Lonely people receive calls, cards or visits. Meetings continue, even on holidays. Hospitals are open, regardless of the hour or day. Donors give blood and platelets, and transfusions save lives.
We try to mend what is broken in the world, in whatever ways we're able. Sometimes it's enough. Sometimes it's not.
In our circle of women, we have all experienced losses. Deep ones. Some that seem beyond hope of mending. And yet, we're all in this room. Somehow, we have words of encouragement and wisdom for each other. Just the acknowledgement that reconciliation and healing isn't easy...or fast...or even always possible. But that the possibility is there...and the desire to make the attempt is the first step. The first stitch, if you will.
We have all recovered from the first of the end-of-year holidays: Thanksgiving. Some folks traveled. Some cooked. Some served others. Some had joyful experiences, or just quiet and comfortable ones. Others had days full of conflict and tension. Everyone is winding down from this month's high holiday, and all of the ones that came before it, layered underneath as memories.
Traditions continue to change in our family. We try to navigate between old rituals and new ones...although nothing feels quite right. Its all second-best, somehow, though we try hard. We cannot settle on a way to get through the holidays...but somehow, we do. And it's not as bad as we worried it might be. In fact, it might even have been okay. Tasty. Good. And fun.
For instance, the three of us are together. Sarah plays in the pep band, and we cheer during the annual rival football game between Ipswich and Hamilton, which our home team wins by one point (phew)! We make traditional recipes. Hang out. Watch a movie. Talk to family. Walk around the neighborhood.
Always, we miss Jessie. We don't even have to say it out loud. It's just a constant ache, and a palpable emptiness. But we give ourselves permission to be happy...to spend the holiday focused on each other, and how we're celebrating, and making some new memories that are good ones.
Over the weekend, we cut a fragrant evergreen tree and put up Christmas lights, and listen to Advent songs. We light the season's first fire in our hearth. Dusk comes early, and often we have candles flickering at the dinner table (when we find chances to sit down to a meal together). The dog follows us from room to room, and Sarah's guinea pig (adopted as a rescue animal just one week ago) is getting more sociable every day...chittering and keeping an eye on our activity, and settling down under her ministrations.
It's not the same as when we had four living family members, and our traditions included Jessie. For instance, we set the table differently...mom sits where Jessie once sat, closing the gap, though never filling her place.
We remember all the holidays that came before this one. Our own gatherings as children. Our history of shared Thanksgivings as a young married couple, spending them with extended family. The start of our own family's rhythms and rituals, including recipes handed down to both parents. Some holidays so grim when we lived through childhood cancer, we didn't think we'd find a reason to be grateful, and yet we did. Some so comfortable and casual and full of good company, all we can recall are hours of conversation and games, cooking together, too-full stomachs and long naps. Some so desperate, we almost cannot breathe. And ones like this. Better than we expected...but not quite...well, we're glad we made it through the day, and we're glad to move on to the next event.
Some holes can be patched. Some seams can be mended. Sometimes, the fabric is so worn in places, so damaged in others, that it has to be cut apart and turned into something new.
Maybe that's what we're trying to do every month, and each holiday. Give a new shape and purpose to what's left. Connect it to new fabrics that are weaving into this storybook quilt that we're putting together, block by block, as life continues.
Sometimes the weather permits a bike ride for dad. Or a brisk walk for mom. Sarah runs track this season, in addition to several hours of dance each week. Mom hoolahoops (yes, you read correctly)!
Sarah is often singing, between chorus, BelCanto and voice lessons. Or playing the saxophone. Dad practices piano, a promise he made to himself, and a challenge he took on this year...perhaps even a form of meditation. Mom...uh, she listens a lot. And hoolahoops some more.
Sarah focuses on her honors classes, and works as a teaching assistant in dance classes. Dad and his business partners strategize to keep their architectural company viable and focused on long-term projects in a tough economy; yet he finds time to volunteer as a Rotarian. Mom freelances, writes and continues the work of Bright Happy Power, the foundation our family runs to help other children and families in crisis.
Yes, we need mending. We're all broken in some way. Lost. Confused. Uncertain of what comes next. Each of us handles grief and stress and trauma differently, and we can be quite isolated from each other, and in need of different forms of comfort and healing.
And yet, we're each finding ways to move along: pedaling, running, walking, hooping. We're all finding some music and rhythm in our lives: voice, dance, sax, piano. We're all finding purpose: studying, teaching, working, mentoring, writing, serving others.
It all takes practice. Attention. Lots of mistakes and missteps and miscommunication occur along the way. Sometimes, we're just too exhausted, overwhelmed, angry or sad to find a way. Other times, we have the energy and focus to make the effort. Mostly, we keep trying.
As the month closes, we know there is mending to be done. Stitch by stich...with threads and tape. Through movement. And music. And talk. And touch. Each gesture forms a small part of a larger narrative.
There's no pattern for what we're trying to make of our lives now...as individuals, or as a family. Who knows what will grow out of our losses, and challenges, and our responses to them? From inside the heart of this wounded family, we cannot see what will come, or the size or shape it will be. What story will the quilt tell, someday when each haphazard square is connected to the ones that came before and after it? We don't know. Not yet.
The journey continues.
Tuesday - October 20, 2009
Shift and Change - October 2009
During October in New England, the colors of the world shift and change. Veils are worn and fall away. Truths are hidden, changed, and exposed. And then what seems real transforms in appearance again, and another layer emerges. Over and over, the world changes, and our relationship to it...our identity in the midst of these seasonal transitions...is altered.
Halfway around the world in Singapore, our family friend Dr. William Tan has lived through the early days of bone marrow transplant...his body's marrow reborn as his older sister's donated cells make their way into his bones. Infections, setbacks, side effects of both the chemo and the disease, as well as the toll the transplant takes, are challenging his survival...but he continues to wake up every day.
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During October in New England, the colors of the world shift and change. Veils are worn and fall away. Truths are hidden, changed, and exposed. And then what seems real transforms in appearance again, and another layer emerges. Over and over, the world changes, and our relationship to it...our identity in the midst of these seasonal transitions...is altered.
Halfway around the world in Singapore, our family friend Dr. William Tan has lived through the early days of bone marrow transplant...his body's marrow reborn as his older sister's donated cells make their way into his bones. Infections, setbacks, side effects of both the chemo and the disease, as well as the toll the transplant takes, are challenging his survival...but he continues to wake up every day.
Being William (will-power personified), he makes plans to return to his life of research, medical practice, fund raising, and setting world records. He wants to come back for another Boston Marathon, racing as a wheelchair athlete in celebration of Jessie and to symbolize his own triumph...but that is many months, many miles and many healthy marrow cells away. He has overcome the limitations imposed by paralysis due to polio as well as cultural, economic and physical barriers, and taken hold of every opportunity that his intellect and his athletic prowess could achieve. Now he lives day by day. And we hold our breath, and lift his name to the light, and wait...we BELIEVE!
Back in New England, purple shadows stretch longer. Bright-hued days grow shorter. Verdant greens disappear from foliage, peeled away to reveal crowns of gold, amber and crimson. Then the colors spiral and fall, cladding the feet and knees of the trees, drifting into pathways and roads, making gilded trails.
Above us, etched against clear blue skies or stormy grey clouds, rise the black interlaced fingers of twigs and branches. Stretching stark and unadorned. It's almost a secret, the first seasonal glimpse of the dark-boned nakedness of exposed limbs and trunks. Startling, when these same towering trees have seemed so thick and full and padded in their greenery and then their fiery fall show.
Now we see another truth: their secret grace and strength laid bare. Uncovered, they stand wrinkled and mute. Knuckled. Dimpled. Moss-grown and knobby. Scarred from loss of past limbs. Bent and distorted by elemental forces that have twisted them out of natural patterns.
And yet, they are unembarrassed in their strength. Sure in their lines and their sweep, whether they rise straight and symmetrical, or tortured in their turnings. They don't apologize for their nakedness or their wayward bends and angles. They simply wear it: another layer of age and certainty that they have earned across time.
The only ones who might blush are the mortals, who dared to think them anything less than beautiful, in any season, under any sky, in any state of disrobing.
Like the trees, our colors are changing. We put away the thin fabrics and bold colors of summer. Choose comforting earthy tones. And black again. Wear layers of soft, inwardly-turned threads that add warmth to chilled flesh. Pull on socks and sweaters, long sleeves and extra coverings. Wools. Flannels. Fleeces. Knits.
In a longer turning, age threads silver through our hair. What do those grey hairs symbolize? Age? Wisdom? Accumulation of days and weeks and years? The sapping away of brighter hues as winter comes?
Hard-earned: those pale strands. Put there by care. Stress. Loss. Time. Too much of some things, not enough of others.
Sometimes we don't mind showing our age, our grey. But sometimes we go back to the hairdresser, and have them blended back into a youthful shade. Hah, but they come back, the true colors beneath the artificial ones. White, silver and grey woven into beards and sideburns, dark roots and overgrown locks. Ultimately, like the autumn trees, we cannot hide the passage of seasons.
In this month of October, we have visited the county fair, started to collect gourds and pumpkins, gone back to cooking hearty stews and steaming soups, and pulled out recipes for holiday pies.
We have also lived intimately with Jessie's loss, and made it part of the season.
Our family attended a camp called Comfort Zone Camp, for bereaved children, which is opening a new location in Massachusetts. Sarah attended the teen portion, while mom and dad participated in the parent sessions. It was exhausting. Necessary, perhaps, but grueling. Almost overwhelming. And yet, their model of working with bereaved kids is quite successful: a large dose of fun and a small swallow of grief. Enough for one meal, one weekend.
One week later, Sarah spoke on behalf of bereaved siblings at the memorial gathering hosted by Children's Hospital Boston and Dana Farber, called "A Gathering to Remember." She read one of Jessie's poems, and shared her memory about her little sister's passion for life, and the impact it had on Sarah. She talked about choosing a path of passion...of courage and hope and love. What she hoped for herself and for others like her, who had also lost a brother or sister.
And of course, this month is the two-year anniversary of Jessie's passage. It's a day we wish had never been added to our family's biography. And we wish we could ignore it...let it pass unnoticed. But it carries weight, and it cannot be stepped over or got around. It must be given its time and space.
We have paid attention, we hope, by participating in camps and memorial services. By staring grief and loss in the face. By acknowledging its child-shaped outlines.
The shape of loss: slim and small. So little to take away so much, and to give so much, too. Oh, Jessie. Who you are. Who you were. Who you might be today, two years later.
We can only focus on what is absent...gone...missing... in small increments. For a few hours at a time. Brief thoughts. Gulps and sobs. Lost days and private moans. Sleepless nights and temper tantrums. Quiet walks and broken words.
Then we have to take back all that we can hold onto. Magic tricks and practical jokes followed by giddy peals of laughter. A flirting skip in leotard and floating skirt across the bright slant of sunlight in a dance studio. A little girl, clad in black, hiding with her black lab in a dark corner, curled up on a hairy dog bed. A young lady in white tights, high heels and red glittering dress, promenading daintily down the stairs and extending a gloved hand for her daddy to bend over in a princely bow, ready for their father-daughter date. A squeal of sisterly outrage, followed by chuckles and murmurs, behind closed doors. A storybook read over and over. Screams. A stomped foot. A taste for spaghetti and sushi and black olives and mint chocolate chip ice cream. A life...measured in colors and tastes, in snippets and threads, in shapes that come and go.
And then, because too much focus on what is lost and missing will topple us, we step back into the humming rhythms of daily life, and immerse ourselves in the rituals of business and school, work and play, friends and family, church and volunteering, projects and escapes. Life. Getting on with it. Being part of it.
Autumn changes our colors. Makes them bright. Brief and blazing.
Pain and grief are threaded into our days. Part of our palette. But as Sarah would say, only one part of the palette. There is so much more...to ourselves, to our lives...than the colors of sorrow, anger, abandonment, and grief. So much more. But always, yes, those colors are part of the palette now.
The season wanes. Colors fail. Foliage falls.
Where the leaves once clung, we are exposed: twigs, branches, trunk and roots. Marked by life and time. Our lumps and scars unmasked. The turning season shows the damage that goes deep into the living heartwood.
There, see? We are wounded so that you might wonder if we can make it through another winter storm. Thick, burled chunks of bark hacked and chewed away. Whole parts of ourselves lopped off. Growth distorted. Pattern marred. Hurt so that our silhouettes are forever changed. Riven. Cleft. Altered.
During this transition between autumn and winter, our silhouettes stand revealed. Upright in our strengths, misshapen by our scars. Wounded. And yet...present.
Tonight, as we write, snow is falling. The world changes again.
The journey continues.
Thursday - September 10, 2009
Nurturing - September 2009
This month, our family participates in the Jimmy Fund Walk. Sarah is the captain of our team. We walk alongside other families and friends such as the Ashleys, raising funds for Dana Farber's cancer research and treatment. Their work benefits both adults and children.
The Jimmy Fund Walk follows the Boston Marathon route. We take the same path our family friend and wheelchair athlete Dr. William Tan, who has raced 26 miles every April for the past several years as Jessie's partner...until this year, when he was also diagnosed with cancer, and is now in treatment to save his own life.
Like William, we navigate the Marathon route to honor Jessie's life, and our family's journey. Every mile, we remember all the others who have died during their childhood cancer sojourns...Hannah, Lia, Grace, Connor, Emily, Ryan, Christina, Lucy, Luis, Caleb, Raymond, Shawn, Katie, Robbie, Julia and so many others.
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This month, our family participates in the Jimmy Fund Walk. Sarah is the captain of our team. We walk alongside other families and friends such as the Ashleys, raising funds for Dana Farber's cancer research and treatment. Their work benefits both adults and children.
The Jimmy Fund Walk follows the Boston Marathon route. We take the same path our family friend and wheelchair athlete Dr. William Tan, who has raced 26 miles every April for the past several years as Jessie's partner...until this year, when he was also diagnosed with cancer, and is now in treatment to save his own life.
Like William, we navigate the Marathon route to honor Jessie's life, and our family's journey. Every mile, we remember all the others who have died during their childhood cancer sojourns...Hannah, Lia, Grace, Connor, Emily, Ryan, Christina, Lucy, Luis, Caleb, Raymond, Shawn, Katie, Robbie, Julia and so many others.
We walk to hold up the children and grownups who live with cancer right now. It affects them, and their families, and their communities. Really...who isn't touched by cancer at some point in their lives, if not at this very moment?
We walk to celebrate childhood cancer survivors such as our friend Matt, Sarah and Kassie. They are three former pediatric cancer patients living within our community, and there are other survivors also living in Ipswich. More live on the North Shore, in Boston and throughout New England.
All of these people have benefited from the work of research institutions such as Dana Farber...because this work is being conducted by private organizations, and it is funded mostly through private donors and contributions. Your help has saved many lives. And it gave Jessie hope for several years...it continues to offer hope and healing.
Last month we rode in the PMC. This month we walk. It's part of the journey.
If you'd like to support Sarah or our Bright Happy Power 'walk' team, please click on this link: SARAH's Bright Happy Power Team for the September 2009 Jimmy Fund Walk.
NURTURING: September seems to be a great time for recipes. After all, our culture is have a veritable love affair with Julia Child's career and life right now...movies, books, articles and recipe-tasting parties abound. Meanwhile, fields are bursting with growth, and barns and markets are burgeoning with produce.
We're excited to test our skills. Expand our culinary repertoires. We're blessed with an abundance of harvest goods to use as we prepare exotic cuisines or beloved comfort food.
As we feed the stomachs of those who sit down at our tables, we nourish our souls, too. Heal each other with good cooking.
Among the friends and neighbors of cancer families within our community, delivering meals is a great way to offer real mouthfuls of support and compassion. It's one less task for overwhelmed parents to tackle after long days in doctor's offices, clinics and hospitals...one less worry...a simple and practical way to give practical help. Our family remembers -- all too well -- just how essential those meal deliveries became during 6 years of living with childhood cancer. Now we have the cook for others.
For families undergoing treatment, if they're able to get away from the hospital, plucking crops from the field and gathering up the autumn's bounty is a chance to immerse themselves in the reassuring cycle of life. It's literally a time to walk in the sunshine and kneel close to the earth, to be connected to an elemental part of nature. To partake of the reaping of seeds planted, tended and brought to maturity.
And after the harvest, we have the chance to try new menus and familiar recipes. We challenge palates with new ingredients. We experiment with flavor combinations. We soothe anxious taste buds with much-loved classics. Sometimes we go back to basics. We nourish each other.
From plant to plate, it's a chance to participate in a basic ritual that is healing and empowering. As opposed to the life-and-death questions of survival by which we measured life over the past several years. A question which continues to be the reality for other families among us.
FOOD as an ISSUE: Of course, food and eating don't always go hand-in-hand with healing and wellbeing. For some people, food is a constant challenge.
Perhaps families cannot afford groceries; they're looking at bare shelves and empty fridges. They're getting meals from soup kitchens or handouts. Relying on food pantries for staples, trying to make ends eat every month.
For others, food itself is the trouble. Maybe people have eating disorders. Or allergies. Or physiological conditions that make it impossible to process or safely digest certain foods.
Even among cancer families, issues about food and eating were part of the experience. My lord, the list of experiences. We remember oncology and transplant diets. Intensive care's more acute scenarios. Cravings. Mouth sores. Ulcerations. Infections. IVs. Tubes. Bulking up. Emptying out. Finding a balance.
And of course, medical caregivers monitored Jessie's intakes and outputs. Calories. Ounces. Bites. Contents: weighed, measured and recorded. Analyzed through tests.
For instance, we remember being NPO - not allowed to eat or drink for excruciating hours -- before surgery or procedures. Sometimes the ban on food endured for weeks. Jessie sometimes lived on IV nutrition: liquid meals pumped through tubes and needles directly into her circulatory system, bypassing her digestive tract altogether. Sometimes she slurped ice cubes, because her body was too ravaged to endure the work of eating and digesting, but she craved moisture...anything...on lips and tongue. The simplest bodily processes were dangerous back then. Life-threatening.
If she couldn't eat, we all tried to experience it with her. NPO? Mom or dad went hungry, too, and we all got cranky together.
Unable to eat for weeks or months? We slipped away when she fell asleep, snuck to the shared kitchen down the hall, grabbed a cold snack or quickly zapped something for 30 seconds in the microwave, and hoped that no alarms had gone off while we were out of her room. Brushing our teeth, chewing gum or popping mints before we came back, so we didn't smell too much like food that she couldn't have.
As her caregivers, we remember cooking in microwaves, or eating cold food. Living off cafeteria choices or restaurant deliveries. Meals far removed from comfort or wholeness. Perhaps nutritionally sound, but not emotionally satisfying.
And yet, even in the hospital, the tiny shared kitchen was the meeting place for stressed parents and bored kids. The common space that made us feel human, where we shared stories and retrieved puddings, cereal or crackers to ease a food craving in a desperate belly. Where we paused to savor a cup of tea or coffee, and escape for a few moments. Or cry. Or complain. Or just...breathe.
FED by a WHOLE COMMUNITY: Gratefully, we recall all of the cookies, brownies and individually packaged meals that other families delivered to the hospital. Ferried from Ipswich to the hospital. Or hand-delivered by other cancer families who were outpatient, but made the trip back to the oncology, transplant and ICU units to help others. Meals tucked into the fridge for those who stayed behind, in the hospital. From homes and kitchens filled with love for us. Including one unforgettable Thanksgiving dinner that fed a whole oncology wing of patients and staff.
We can almost taste many of the hot meals delivered to the house. Casseroles. Salads. Soups. Lasagnas. Chicken dinners. Fish recipes. Tacos. Pizzas. Gift certificates to local takeout places. All sorts of cuisine. Comfort foods. A stocked freezer. Groceries. All the cooking that kept us going and reassured us of our community's presence along the way.
MEMORIES RISE from the FIELDS: We remember. Backwards, to autumns of picking apples. Summers of plucking strawberries and green beans. Sarah and Jessie filling bags and baskets at Appleton Farms.
Now when we walk through the fields of Appleton, those layers of experience are always present. Like footprints down the rows of crops. Fingerprints on the leaves. Sown into the farm's environment, ripening every season so that we can come back to them and feel them again and again.
This month, there's the opportunity to preserve the season's vegetables and fruits in jars and bags and containers, to be savored later in the winter and spring. In months to come, when the earth is covered in snow, and bright colors and bold flavors are just a memory, we can pull down the year's bounty from the pantry or freezer, and taste it anew.
Preserved, it lives beyond its first blossoming...a gift in times when we need that reminder of bright skies, brown earth, drenching rains and verdant crops. In moments when we need to remember our sun-kissed daughters bending among the green leaves, discovering the juicy treasures and snapping goodness of life with their fingertips and tongues.
Recipes. Comfort food. From field to feast, it's real. It sticks with us. It nourishes us. It heals us. It sustains us.
The journey continues.